Monday, 27 October 2014

When
I had my abstract, ‘End-of-life care: A very personal story’ accepted for oral
presentation at the 2014 Alzheimer Europe Conference in Glasgow, I honestly never
expected that it would receive a standing ovation from the audience. My
presentation was included as part of the session on Palliative Care, and given
the difficult nature of this topic I thought the audience would be small and
very reserved. How wrong I was!

My
presentation was inspired by my blog post of the same name published in
2012 that detailed my dad’s end-of-life care. The reason I chose to submit an
abstract about it was purely because I feel that it is an outstanding example
of end-of-life care being delivered in a care home setting, with the potential
to inspire care providers as the very best of ‘best practice’.

Whilst
it may be intensely difficult for me to talk about, mostly because it brings
back very vivid memories of great sadness at losing my dad, it is vital
that professionals caring for people at the end of their life (whether those people
have dementia or not) understand what good end-of-life care looks like, how to
deliver it and why it is so important.

End-of-life
care is emotive. It is something many of us instinctively steer clear of, and
as I told the audience at the Alzheimer Europe conference, it is something I
never really thought about until my dad needed it. What I also learned from other
presenters in our session is that end-of-life care is something that many
professionals aren’t very well equipped to deliver either.

There
is a lack of training for healthcare professionals in end-of-life care, and
training within social care settings is patchy and often inadequate. It’s not
just about how to provide end-of-life care either; it also about how seeing
someone through to the end of their life impacts upon the professionals who
have provided that care.

The
landscape in end-of-life care is complex, and full of stark realisations about
facing up to our own mortality whilst providing the very best care to the
person who is passing away. The overwhelming message from the Palliative Care
session at the Alzheimer Europe Conference, however, was that despite the
complexity of our emotional responses, the practical nature of end-of-life care
is generally about simplicity and humanity.

For
example, in my presentation I detailed the environment that my dad spent the
last two weeks of his life in:

"Before dad’s
arrival at the (care) home we had filled his room with his favourite things.
Surrounded by his books, pictures and mementoes, with his much loved music
playing and a lavender scent in the air, dad spent the last days of his life in
bed, in his own cotton sheets and dressed in his own smart clothes. His bed
faced a large window that looked out onto the garden where squirrels and cats
played – a perfect scene for a man who had always loved animals."

I also spoke
about the care he received from the care home staff, including a lovely soak in
the bath, delicious puree food (up until the last 5 days of his life) and how
he was regularly turned and changed, enabling his pressure sores to almost heal
by the time he passed away. There was a special mention for the care home staff
too:

"We could not have asked for
professionals who were more caring, attentive and loving than those people were
towards dad."

In these
days of negative perceptions towards social care, and the people who work on the
frontline in care homes up and down the UK, it is sadly very rare to hear good
news stories, not least about end-of-life care, which is often fraught with
disagreements and issues about palliative care being tantamount to ‘giving up’
on a person.

Yet good
social care, and indeed good palliative care, can give immeasurable help and
support to families when their loved one is nearing the end of their life. As I
told the audience in Glasgow:

"An intensely sad
time was made bearable for us as a family precisely because of the care given
to dad. We felt huge relief that we no longer had to worry about whether dad
was receiving the care that he needed, and the fact that he was so comfortable,
calm and peaceful was testimony to that care."

What of the
staff providing that care though, and their feelings? I could never have made
this presentation without eluding to how they reacted to my dad’s passing, mostly
because their humanity shone through in a way that for me should be celebrated:

"When dad was
wheeled out of the home for the last time by the undertakers, the staff cried
with us – for them, although losing a resident wasn’t a new experience, it was
clear that every resident and their family matters. In that moment, their
humanity might have ‘gone against’ protocol and practice, but it said so much
about the care and compassion that underpins their work and which no amount of
mandatory box ticking should ever be allowed to eradicate."

People
who work in care jobs are human beings, with natural human emotions. Any
attempt to turn them into robots who don’t have those feelings is basically
asking them to remove the element of themselves that is most vital in providing
the warm, caring, compassionate support that we would all want for our loved
ones and ourselves.

That
theme of humanity featured heavily in the list of the key elements of my dad’s
end-of-life care that I concluded my presentation with, and that motivated me
to write this blog. I would give each entry on this list equal importance and suggest
that together they are viewed as part of a holistic package of end-of-life care:

Person-centred
care

Teamwork with
families

Attention to
detail

Well-trained
and well-led staff

Dignity and
respect

Kindness and
compassion

Personalised
environment

Time and
patience

Continuity of
care

Can-do
attitude

Multi-disciplinary
team approach

These
key qualities embody the simplicity I mentioned earlier, and also include one
of the two main themes of the 2014 Alzheimer Europe Conference – Dignity. You
would think that achieving dignity in the last days and hours of someone’s life
is something that would happen routinely, but sadly not everyone is as lucky as
we were as a family.

I
hope that the standing ovation my presentation received is proof that my dad’s story
can inspire better end-of-life care for other people in the future, and that
speaking about even the most difficult topics can be warmly received if you
connect with people on a human level. And that is perhaps the most important
message of all: we have great caring qualities as human beings that have the
ability to change lives at every stage of life, even at the end.

Monday, 13 October 2014

One
of the most controversial elements of care provision is touch. It has a
discomfort associated with it for many professionals, and even family
members can have deep reservations about touch. It can be associated with
abuse, both by ignoring someone's need for a comforting touch or the more
commonly made association of inappropriate touch. It is also a topic that us
famously reserved Brits don't really like talking about.Touching
another person can happen in a variety of situations and for a multitude of
different purposes. It can be the basic things, like a clasp of the hand when
you greet someone, a hug, a kiss on the cheek, ruffling hair or brushing
against an arm. It can be touch that is necessary to help a person with
something, like personal care or eating and drinking. Touch can be used to
support, comfort or reassure, but it can also cause alarm or anxiety.Touch
has an important role to play in dementia care for the majority of people who
are living with dementia. Understanding the individual preferences of a person
around touch is vital to ensure that you don't dismiss a person who seeks
comfort, or distress a person who feels that touching them is an invasion of
their personal space.Against this backdrop, why do we have such a deeply uneasy relationship with touch,
given that it is a natural part of life from the moment we are born?For
professionals, a lot of the issues around touch are about what is appropriate -
there is an underlying fear that any intervention must be proportional for a
particular situation and justifiable to anyone who may observe and question.
Yes, touch is sometimes associated with inappropriate behaviour and criminal
acts, but those incidents are few in comparison to the vast majority of
instances where touch is giving support, comfort and putting humanity into
care.Occasionally,
issues around touch can be rooted in fear about older people and advanced dementia. A good example comes from a particular interaction between my dad and an out-of-hours doctor.
It was late on a Saturday evening when the doctor called to see my dad for a suspected chest infection. During the
necessary examination, the doctor refused to touch my dad, instead issuing instructions to remove clothing and
position dad in a certain way. I was appalled - the lack of warmth in that
doctor's approach betrayed everything that was wrong with his bedside manner.Fear
of touch can also come from concerns about protocols. I remember seeing care
workers walking past and ignoring a lady who was crying out to see her husband.
When I asked why they were not comforting her, they said they weren't allowed
to. I was horrified and couldn’t just walk on by, so I stopped and put my arm
around the lady. We sat there for a while, she was crying, I was trying to be
soothing. I can't prove my intervention helped, but I can say that if I had
been that lady I would have felt considerably less alone as a result of a
comforting touch.Sitting
holding my dad's hand was a standard element of all the hours we spent
together, as was stroking his head or his arms. However, not all family members feel
comfortable about touching their relatives in this way. Visiting a
loved one with dementia can bring with it a raft of emotions, and as much as we
don't like to talk about some of the more uncomfortable aspects, for some
people this can include feelings of revulsion, of not wanting to become 'dirty'
or 'catch' something. In short, not touching can be method of protection for
some individuals.At the
other end of the scale are family carers, who find themselves thrown into an
unfamiliar role that is inevitably going to involve a lot of touch. Having to
cope with an increasing need from their loved one for help
with personal care can be hugely difficult. Any care that involves touching
intimate areas, such as changing incontinence pads or bathing, can be
especially problematic, and even more so when the relationship is between a
child and a parent, and where the two people involved are of the opposite sex.So
how do we become more comfortable about touch, and the vital role it plays in
caring for people with dementia?A
significant part of the answer to this lies within ourselves. Confronting our
own reservations about touch is the first step towards feeling more comfortable
about it. Reservations in relation to touching people with dementia can often
be rooted in stigma - one of the most astonishing things I ever heard was the
idea that somehow you might 'catch' dementia from touching someone who is
living with it. Perhaps that is what that out-of-hours doctor was afraid of.As
a family member visiting a relative who is living with dementia, engaging in
practical activities that may naturally lead to an element of touch - in terms of
guiding or assisting the person with dementia - can help to make touch feel like
the normal part of life that it is. If you are a family carer having to
undertake increasingly personal touch-related care, knowing that you are doing
things in the right way (for example techniques for moving and handling, washing
and dressing etc) can often help to reassure the carer. That guidance could
come from a district nurse or other qualified health or social care professional.For
professionals, I think touch will inevitably remain a difficult area. Some
people can naturally incorporate touch into their care provision, and so long
as that is done in a way that the individual receiving care is comfortable
with, then it is a win-win for all. Learning to gauge that comfort level takes
a degree of skill and experience, and guidance from other members of the team.Most
importantly though, it is about communication with the person you are caring
for and observation of their needs and reactions. It's about being adaptable,
and not assuming that what was ok yesterday is ok today or tomorrow. It is also
about establishing relationships through continuity of care and reflecting on
what is going well and what could be done better. In
the end, touch is a human reaction, and hugely associated with our emotions. It
is part of who we are, and as such it has to be part of the care we provide.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.